IT’S NOT A QUESTION OF AWARENESS. The issues implicated in the disparate outcomes seen in cancer care for different communities have been known for decades, said Danielle Carnival, deputy assistant to the President for the Cancer Moonshot and deputy director for health outcomes in the White House Office of Science and Technology Policy. Delivering the opening keynote for the 2023 American Association for Cancer Research (AACR) Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved on Sept. 29, Carnival challenged attendees to get to solutions for the inequality evidenced in disparate cancer outcomes among populations in the U.S. (The AACR also publishes Cancer Today.)
“We can no longer just have conversations, we need to really drive forward on what it looks like to implement change,” Carnival said.
The meeting held in Orlando, Florida, (and streamed virtually) is the 16th conference on disparities held by the AACR, a testament to the difficulty and ongoing challenge of addressing inequities in cancer. But with the recognition of how much work there is still to do, there was also evidence of progress and signs for the path ahead. Carnival was joined in the opening session by patient advocate Aki A. Smith and research Folakemi T. Odedina, who was recognized with the AACR Distinguished Lectureship on the Science of Cancer Health Disparities.
Solving health disparities will be a major undertaking that will touch nearly every aspect of care and research, Carnival acknowledged. “We need a system that better supports patients,” she said. Carnival cited a list of needs from overcoming challenges of poverty, such as increased exposure to cancer-causing toxins, to understanding systemic racism and how to remove it from health care, plus addressing drug prices and access. “There is a lot, when you start to look across all the places that disparities happen within the system, to unpack and conquer,” she said.
Carnival noted some of the recent efforts from the federal government including the Cancer Moonshot, initiatives to discourage smoking and help people quit, and a law signed in 2022 that included a directive to study cancer exposures in service members and provided for greater coverage of conditions linked to those exposures. She also spoke about the role of environmental justice in cancer inequalities and noted that the bipartisan infrastructure bill signed into law by President Joe Biden in 2021 included funding to clean waterways and federal Superfund sites.
She highlighted how new technologies bring new hopes but also questions. The rapid development of generative artificial intelligence has gotten a lot of attention for the possible applications in health care, but also brings concerns that old biases could be replicated and baked into the system.
“We’ve turned some cancers into curable diseases. We’ve turned others into livable chronic diseases,” Carnival said. But, she noted, the overall improvements often disguise widening disparities. “While we need to drive new ways to prevent, detect and treat cancer, we have to make sure that those tools and the tools that we develop along the way reach more Americans,” she said.
Following Carnival, the Advocate Keynote address was delivered by Smith, the founder of Hope for Stomach Cancer and the primary caregiver for her father, Shigeo Tsuruoka, who was diagnosed with stomach cancer at age 71 in 2013. Smith spoke about four disparities her organization, in collaboration with health care data analytics company Komodo Health, found in stomach cancer care—age, socioeconomic status, location and race—illustrated through the experience of her father and other patients.
Learn more about Aki A. Smith’s story in this 2018 profile in Cancer Today.
Smith described the barriers she and her father faced, from disputes between doctors to endless appeals to her father’s Medicare provider to cover care recommended by his medical team. Even after getting through the initial challenges to find higher quality care at an academic medical center, Smith and Tsuruoka realized they now had to make regular exhausting drives to appointments and that a procedure could be delayed or denied due to a discrepancy between the doctor’s order and the insurance coverage.
“I am very thankful l was able to be my dad’s ‘everything ninja.’ My dad’s medical [insurance] group seemed to think they had a vote in my dad’s care, and if I was not there to interfere, they might have. Maybe my dad wouldn’t be alive today,” Smith said.
The evening was rounded out by Odedina’s Distinguished Lectureship speech. Odedina, a researcher at the Mayo Clinic Comprehensive Cancer Center in Jacksonville, Florida, and a member of the AACR Minorities in Cancer Research Council, spoke about the lessons she learned in her career to guide the next generation of researchers as they work to lessen the disparities in cancer care and outcomes.
At the base of everything that needs to be done to build up to equity, Odedina placed community engagement. “Trust is not something we can get overnight. It requires sustained relationships,” Odedina said.
She described how, in the course of her research, she has undercut some of the misconceptions that have been allowed to grow when communities are kept at a distance from the health care system. “People say Black men don’t want to [participate], that’s a lie. Black men want to participate in studies. They just choose who they want to participate with,” Odedina said. In speaking to Black men about prostate cancer screening, she learned that they wanted to hear from other Black men who had experienced prostate cancer. She said they found that men who come from that experience approach the work with the passion that comes from being personally invested in that disease and that community. She also discussed many of the ways that trust can be weakened, from not paying community partners to not sharing results with study participants.
Odedina emphasized the importance of getting care to the people who need it instead of waiting for them to come for treatment, especially in the wake of COVID-19 when there was rapid adoption of tools and methods to offer care and do research while people remained at home. In an echo of Carnival’s challenge, she pressed the need to take what is discussed and bring it into solutions in underserved communities. “We have to be everywhere, from the mobile unit to churches,” Odedina said.
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